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To My Husband Who Didn't Sign Up for My Chronic Illness

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Dear husband,

We met a couple of months before I turned 18. At that age, we didn’t really think about the future. We were young. You were funny, cute (still are!) and we got along for the most part. We moved in together very quickly. So fast that we celebrated my 18th while living together. It wasn’t easy but we made it work. Every fight, every move, every family issue…it was easy to work it out with each other. You have been my rock and biggest supporter through the most difficult moments of my life. Even the parts I wish you didn’t have to be there to see.

 

A mere six months into our marriage I went from “healthy” to chronically ill. When I first got sick, you held my hand when I thought I was going to die. My anxiety over my health kept me up late at night but you didn’t leave my side. You let me stay home with our son. You didn’t blink when you needed to quit school and take an awful job to pay my new medical bills. Never once have I heard you complain. I didn’t hear you complain when we had to move in with family because I needed more help than you could give while working. Not even when you would come home to a dirty house and have to make dinner for our little family. From day one, you supported me without hesitation. You helped me get to all my appointments, you made sure I took my medications, you made sure I ate healthy when I wanted to just sleep and most of all you loved me when I couldn’t even love myself. As always, you’re my rock and my best friend.

I thank you for being my everything and putting your family first when many might have left. I also want to apologize. I’m sorry you didn’t know what you were getting into. You didn’t sign up for my diseases. More often than not I wonder if you regret marrying me since I’m sick so frequently and we have buried ourselves in debt to keep me alive. I wish I would have known when we met. I could have saved you from me; I could have saved you from a disease that has pushed so many of your dreams aside. When I look at you I feel that you deserve so much more than what I have to offer. Although you have never shown me you feel that way, it is constantly lingering in my mind.

While I’m in better health now, I have my bad days. You still smile and ask me how my day was when you come home. Even if I haven’t showered and the dishes are still in the sink. If I have been pushing myself too hard to keep up with our daily life, you’ll remind me to rest. When you look at me all I see is love. I know in my heart you would still say “I do” even if you knew about my lupus. I’m sure you would jump in with the same enthusiasm and love that you do now. When my guilt from my illnesses surfaces I have to remind myself that you love me. That even with lupus and my other issues I am worthy to love you and to be loved. Thank you for being you, for accepting me for who I am and for being there unconditionally. Without you, I wouldn’t have made it this far.

– Your Loving Wife

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Thinkstock photo via Kerkez.

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What 'Just a Cold' Can Mean for Those on Immunosuppressants

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When you have lupus, a chronic illness or any autoimmune disease, it’s never “just a cold.”

If you’re on immunosuppressants, “just a cold” can turn into a pretty major or even life-threatening infection scarily fast. Even if you’re not on immunosuppressants a cold can still trigger a flare-up of your lupus or chronic illness, resulting in a need to change or increase medications.

During a recent winter my boss came to work with a cold…which I, being on three different types of immunosuppressants, caught very quickly.

Within 24 hours I was seeing my GP, who gave me antibiotics for a sinus infection. I have a very good rheumatologist who asks to be notified if I even get so much as a sniffle, so I rang him. After speaking to me, he begged me to get someone to drive me the three hours to go see him, so less than 12 hours after seeing my GP I was at the rheumatologist’s office. A quick examination and it was straight to hospital where I was admitted for double pneumonia and pleurisy. This all happened in less than 48 hours of being exposed to the illness!

A week in the hospital, away from my young family, months off work, so many expensive tests and medications. The cost to my family life, my work life, my social life and finances is just beyond comprehension. After all, it was just a cold…

I had been so well for so long that I had been gradually lowering my doses of things like methotrexate and corticosteroids with my rheumatologist’s guidance and had finally been feeling like I had some control over my body again. But this one little cold put me back to before square one again. It’s been over 12 months now and I still haven’t got back to those pre-cold doses of medications. I feel like the steroid moon face will be the only face I will see in the mirror forever.

And still people say, “Don’t worry, it’s just a cold!”

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Thinkstock photo via razyph.

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A Year of My Life With Rare Diseases in Photographs

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A year of living with rare diseases in photographs:

May is Lupus Awareness Month. Lupus is one of the many rare diseases that I struggle with every day*. It is often hard for others to see what my life looks like. It is so far removed from a typical life of a 20-something young mother – or for that matter from the typical life of healthy individuals at any stage of life – that my words don’t often convey the truth well enough. And I’ve found that without being able to understand someone else’s truth at all, we tend to dismiss their lives as a whole. So over the past year, from last May to this, I’ve tried to collect photos, mostly self-portraits, that show some of the truth of this life. There will, of course, still remain something intangible. It is difficult to catch frustration, pain, desperation, poverty, surrender, gratitude, the feeling of being completely out of control, the way disease seems to infiltrate every aspect of life…but I’ve done my best to capture little pieces of it here.

I suppose it may be helpful for those who didn’t know me prior to being sick to know how my life looked then. I was fit. I went hiking maybe 100 miles or so in a month and worked full-time while in school full-time until getting my Master’s degree in marine biology (and then subsequently getting sick). I volunteered quite a lot and did everything in my power to minimize my impact on the planet. Now that my life has changed, there is a new me and new choices I must make, which I don’t always like. No matter how I feel about it, this is how my life is and how my life will be, and I try my best to make the best of it. And sometimes, it can be pretty awesome too.

*I have been diagnosed with lupus, mixed connective tissue disease (MCTD), antiphospholipid antibody syndrome, myasthenia gravis (the diagnosis of which was actually called into question during this year), fibromyalgia and –diagnosed during this year – hyperadrenergic postural orthostatic tachycardia syndrome and baroreflex failure. I have nerve, muscle and joint damage, resulting in loss of function of some of my basic systems. This also led to my surprising very premature and dangerous delivery (before which I had thought I was healthy). Not all with lupus will have a journey like mine! Everyone is different (especially since I have several other diseases) and much can be done with proper care as well.

Being sick has made me require a wheelchair. Unfortunately, so much of the world is inaccessible, especially so much of the natural world (let’s not pave it all over either!). I am often just on the outside of experiences, such as taking my son to the beach.

My husband, knowing I am not content with the perimeter, particularly of nature, has dragged me in my wheelchair to many an inaccessible place. The wonder of nature has thus been far stronger than the physical pain and shame/anger at myself for needing to be dragged across the beach.

Here my husband is trying to transfer me to the bench (that’s a heart monitor, not a purse). My husband has had to fill the role of caregiver as well, and not just to me, but to my disabled son as well. I have lost a huge amount of independence, which is upsetting. It is also upsetting that my husband has lost some of his independence as well by becoming a caregiver and that he shouldn’t have to do that at 30 years old. (You can see our wedding photo behind him – in sickness and in health, right?)

Being sick is painful. My joints often hurt too badly to be used and several times a month they hurt beyond being able to respond to any kind of treatment, leaving me in agony and, at times, in tears. I have round-the-clock pain medications, but illness is painful.

There are mountains of paperwork required when you are sick and/or disabled. Between keeping up with medical insurance, medical and pharmacy bills, many government programs, medical documents and records…the amount of paperwork is something I couldn’t have fathomed. The other part that I couldn’t have fathomed is the poverty. I somehow expected that in this developed country, we take care of our sick and disabled, but it is a much more desperate reality. You can have your short-term survival or your long-term survival, but it is not easy to have both.

I wear a BiPAP ST to sleep. It breathes for me, giving me a pressure to breathe both in and out, since my respiratory system is no longer able to breathe through the night on my own or keep carbon dioxide from building up in my system.

I have vomited out of the side of the car way too many times to count. My body has become too weak to hold it together through the hard work of vomiting, and so I often end up injuring myself in process now, such as tearing tendons in my shoulder or popping dozens of blood vessels throughout my face and eyes.

To keep my many rare diseases under control, many prescription medications are needed. I take over a dozen medications. Each one is thought out with my medical team (no, I don’t want to try any supplements).

A device that helps to open my lungs when my breathing is worse.

Sometimes I get too sick to participate in the world for periods of time. I feel like I can push through a lot of the time, but sometimes I simply get too sick and get stuck in bed for a while.

…But I don’t spend all of my time in bed alone! When I’m not well enough to participate in the world, my family usually keeps me company, which is probably who I would’ve hung out with that day anyway. So I’m thankful to have awesome company.

I have spent many hours in the comfortable chairs of the Infusion Clinic at the university hospital. Once a month, I spend a day waiting while immunosuppressive drugs are slowly infused into my body. Chemotherapy and other immunosuppressive drugs are often used to control autoimmune diseases, especially for those whose disease is more aggressive.

When I was pregnant, I imagined all of the things I would do with my child, and pretty much all of them involved traipsing through nature, exploring. The way my motherhood has actually played out has been different, and although we have found many things to enjoy together, I would love much more to be able to run in the waves with him and to share with him all of the secrets of the natural world.

The muscles in my bladder are nonfunctional, which requires me to use catheters. The amount of medical equipment required to keep someone that’s seriously ill afloat is wild. And every time I need to leave the house, I feel like I am bringing the house with me.

Our calendar is filled with doctors and medical tests and therapies. Between my son and I, we usually have at least one appointment per day. We have on average 40 appointments (including therapies) per month. The amount of medical care alone is often exhausting.

We spend so many hours at doctors’ offices and hospitals. We usually make a weekly trip to either the university hospital for my care or the Children’s Hospital for my son’s care – either trip consuming an entire (long) day. Many, many hours have been spent at these hospitals.

Countless hours are spent in doctor visits – a couple every week.

My son is used to the long car rides back and forth to the city to get to the only hospitals in this region of the U.S. capable of treating us. (Sometimes he still gets tired out.)

We have spent so much time in hospitals, in both planned visits and emergencies, that it feels familiar.

Inclusion & Accessibility: Here is an example of something I would have loved to be included in – crawling through a Jefferies Tube (Star Trek) with my family, but it was not something I could physically access.

Inclusion & Accessibility: This was something I could physically access. I think something that is very difficult to understand though is that even when you can access something, it is rare to be fully included in the way an able-bodied person is. Although I am grateful to be included, it is often on the perimeter or in an altered way, not fully included. I am grateful to have been able to participate in this photo with my family (and Klingons), but I was off the set and difficult to frame into the photo, difficult to interact with on the perimeter. After a while, a life on the perimeter, an adjusted life, wears on you a bit. (This is just one of many examples – we had a ton of fun at this event!)

I have had so many vials of blood taken for testing. Every month I get several tubes of blood taken as routine testing, then add on any extra vials for other concerns, other testing or retesting when my blood work comes back concerning. I used to be afraid of needles (fainting afraid), but this consistent exposure has completely cured me of this fear.

Complex and/or rare diseases come with a lot of testing and, as pictured above, a lot of medical imaging. In addition to diagnostic imaging, I often get checked for pneumonia, blood clots and joint/bone damage.

Neurological testing is often needed to assess the status of my neurological diseases.

Urinalysis is a common test to accompany blood work, especially for lupus patients, and is done often. Sometimes urine even has to be collected over 24 hours, which is always inconvenient.

Countless amounts of testing are needed, even when diagnoses are not being made. This sleep study was to find better settings for my BiPAP to ensure I am breathing well and getting rid of as much carbon dioxide as possible.

Due to my son being born premature and having autism, he requires several weekly therapies.

Due to my illness (which didn’t start until pregnancy), my son was born premature at only one pound. He had to be intubated so long after birth that he now has lung disease and is medically complex himself. This photo is from an airway surgery he had this past year.

My son’s lung disease makes any respiratory virus dangerous. My husband and I have basically become his EMTs as well as all the many other hats we wear.

My son is medically complex and his life is just as full of testing and doctors.

Due to my son’s autism, our lives are always a little out of hand. And his needs have compounded with mine to require a lot of caregiving, which is all on the shoulders of my husband. His needs have shaped his homeschooling, but his strengths and interests have shaped his homeschooling just as much.

Lupus causes me to be very sensitive to sunlight, which means that my skin needs to be covered when we go out.

It is hard to balance between accepting my limits and pushing them.

Lupus often causes fevers, which I could live with on any given day.

I’m not sure, had I remained well, that I would’ve found such happiness in photography. It is one of the things I am most thankful for being given in my illness.

Some relationships have suffered since becoming sick, but some relationships have grown even stronger. There is nothing like feeling like someone understands you and accepts you for who you are, illness and all. And seeing my son who has his own illness and disabilities accepted is all I could hope for in the world. I feel like there are people there for me in the world in a way I never experienced before becoming sick.

This post originally appeared on Tiny Salutations.

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Selena Gomez Wears Fall Risk Bracelet in 'Bad Liar' Music Video

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Celebrities often draw attention for their fashion choices, but Selena Gomez’s latest accessory is one many people living with a chronic illness may recognize. In the music video for her new single “Bad Liar,” Gomez, 24, wears hospital gauze and a yellow “Fall Risk” bracelet. The addition of which was agreed upon by Gomez and her producers, after she arrived on set wearing both items, following treatment she received earlier that day for lupus.

Shortly before the video’s release on Spotify, Gomez posted a teaser photo to her Instagram account, confusing fans unfamiliar with the bracelet.

#BadLiar 5.18

A post shared by Selena Gomez (@selenagomez) on

According to the American Hospital Association, fall risk bracelets act as “a warning to slow down, pay attention, and take special precaution,” as well as alert hospital staff that the person wearing the bracelet may lose balance and fall.

One Instagram user, commenting on the photo, said “I didn’t think anything of the fall risk bracelet until I saw the bandage on her wrist. What’s this pic trying to convey? Attempted suicide?” Petra Collins, who shot the photo weighed in on the comment and clarified that the bracelet and gauze were not in fact props, saying, “not at all, Selena came straight from the hospital to do this shoot—from being there for lupus.”

This isn’t the first time Gomez has let fans into her experience living with lupus. In 2016, she canceled the South American and European legs of her tour to check into rehab to manage the panic attacks and depression she developed as a result of living with lupus.

“I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke,” Gomez told Billboard in 2015. “I locked myself away until I was confident and comfortable again.”

The singer has previously also donated to the University of Southern California’s Keck School of Medicine’s Selena Gomez Fund for Lupus Research, which will support a pilot program focused on treating complications of lupus.

Gomez is currently working on a number of new projects, releasing new music and co-producing the Netflix series “13 Reasons Why,” which was recently renewed for a second season.

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'To Blog or Not to Blog:' Why I Finally Started Posting About My Illnesses

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When you are handed a life-changing diagnosis you face many choices about how you will handle the news. Will you take to your bed and run countless Google searches? Do you choose the path of denial, ignoring the diagnosis and going on as if the sky is not falling, dealing with it only when things get so bad you have no choice? Are you the type who prefers the Lifetime movie heroine, the cockeyed optimist who cheers up everyone around her, confiding “the news” to those only in your inner circle but proclaiming to all you know you can beat this, impressing everyone with your upbeat, positive outlook?

Social media has completely changed how we engage with the world and our illnesses are no exception. Have a cold? Post a Facebook status and a request for the best gluten-free matzo ball soup. Trip to the ER? I’ve seen status updates I swear were posted from the back of the ambulance.

We live in a society that “shares” and as such has created wonderful opportunities for awareness and a sense of community where many of us with lesser known diseases previously had none. When I was first diagnosed with fibromyalgia, I knew no one else with it, and only a few had even heard of it. Hashimoto’s thyroiditis? Most looked at me and asked if that was a sushi roll.

By the time the “big one,” lupus, came along, the feeling of isolation and fear was beyond measure. I was already cautious about how much I shared my health struggles on social media and now I faced yet another obstacle. I’d seen those friends who lived their lives online and shared every detail and I knew that wasn’t my personality. As a public school teacher, I’ve always been conscious of what I’ve posted. How could I merge this new “truth” of my life without sacrificing my privacy? How could I be honest with my friends and family without sharing how my world was being turned upside down?

In the beginning I erred on the side of extreme caution. As I was in and out of the hospital those first months, you’d never know it from my news feed. I learned to use “coded language” to let the few who even knew I was in the hospital again know I was home. (“There’s no place like home” carries a lot of meanings in the eye of the beholder.)

Looking back, I think I was so afraid of being the “over-poster,” looking like I was seeking pity or, even worse, attention, that I don’t think I even used the word lupus until we were fundraising for my first lupus walk.
Slowly, I began letting people know through informational posts during May, Lupus Awareness Month, facts about the disease as my way of sharing my story in a generic, non-threatening way. Perhaps I figured if people knew more about my disease they would understand more of what I was going through.

Unfortunately, facts are just that: facts. They lack the personal animus that give them life so slowly over the past few years I’ve begun letting people into my world with chronic illness.

This is what led me to finally decide to share my stories with The Mighty. I was tired of playing the plucky upbeat Lifetime story of my life online. Am I scared about the possible ramifications of sharing my truths in this way? Absolutely. Do I worry about being judged and derided for my decisions about sharing my stories? You bet.

But I’m too tired fighting for my life and balancing too many medicines and too many doctors and too many complex medical conditions and working and my husband and two beautiful children to worry too much. Because when it comes down to it, it’s my truth and my stories to tell and I get to hold the pen – not some Hollywood screenwriter. And if sharing my stories can help some scared person out there who needs to know they’re not alone then it’s worth it.

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Thinkstock photo via opolja.

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Trying Out New Medications Doesn't Always Have a 'Disney Ending'

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Today I was approved for a new medication and I’m elated…and terrified. After too many years, too many meds and too many hopes, I’m trying to go into this with a sense of “cautious optimism.” Will this work? How many doses will it take? Will this be the “magic bullet” to finally throw the lupus beast into the word I only whisper…remission?

Five years ago the decision was made that my lupus was progressing to a point where we needed to treat things more aggressively, and a more heavy duty chemotherapy agent would be needed. My beloved rheumatologists sent me to the most cutting-edge lupus research center where they would have access to the most up-to-date dosing treatment plans.

As I met with the kindest, most human doctor, he laid out all of the risks of this new medicine, Cytoxan. Words like “increased risks for bladder and other cancers,” “hair loss” and “nausea” flowed but I signed all papers, shocking the new doctor with my usual dark humor in these situations – cracking jokes to dispel my fear and discomfort. But a desperate woman will cling to any piece of driftwood when she is drowning and if this meant there was a chance of beating the lupus, I would take the risks.

Once a month for sixth months, my husband and I would wake up early, drop our children at my dear friend’s house, drive over an hour into Philly and prepare for the six hours at the hospital infusion center. Cytoxan is such a toxic drug (it says it right there in the name) that there are bags upon bags, hours upon hours of fluids and other medications that must be administered before and after the actual drug to protect you.

I had been given good advice to get a chair “near the bathroom” (best advice ever) since all of that fluid means lots of trips to the bathroom. Remember that dark sense of humor? Well, every time I needed to use the facilities I would entertain the nurses and others with my rendition of “pole dancing,” a.k.a. boogying with my IV pole as I always had some music playing.

For the actual Cytoxan administration, I had to give it a “theme song” (I’m a musician – occupational hazard). Since we were in Philadelphia, I decided to use the “Theme from Rocky.” Each month when it was time to start the actual Cytoxan portion of the infusion, I would play the music and positively imagine the meds punching out the lupus. Each time we’ve added a new lupus med it’s received it’s own theme song. It’s just something I do. We all have coping mechanisms. Dark humor and theme songs help me.

EJ, my husband, and I had a ritual where he would get us lunch from one of the food trucks outside of the hospital. We knew I’d be nauseated for the next few days and it would be my last good meal for a while. We read, watched movies, talked, laughed and passed the time together. Together, as a team, we faced this battle, praying this would keep the monster at bay, since there is no lupus cure.

The nausea usually hit about 45 minutes into the return trip. The next few days involved a fatigue unlike any I’d felt before. Each month, the effects were worse, the impact greater. In August I went to set up my classroom. After a short period of time there ended up putting me in the hospital, the decision was made that for the first time since I’d started teaching, I would not be in the classroom in September.

My hair thinned dramatically so I cut it short. I put on a lot of weight, making me quite angry. Exhausted, physically distorted and miserable, I soldiered on because I believed this would help me. This new med would be the one to return me to some semblance of the life I used to know. My children needed their mother back. My husband deserved a wife who was a functioning partner. I missed my students, my classroom and teaching!

If this was a Disney story, this is the part where everything comes together. The meds work – the lupus goes into remission. There’s a fabulous montage set to some up-tempo 80s hit of me going back to work, rejoining my life, losing the weight, growing back the hair and running a 5K for lupus research. Throw in furry woodland creatures to make me a fabulous dress for the ball scene with my husband and I’m in!

But life isn’t a Disney movie. It was a slow return. Returning to work was exhausting. I would get home and fall asleep on the couch at 4:00 p.m. It took four years to lose most of the weight I’d put on, only to play “Taper Tango” with the Prednisone and gain some back when the doctors had to raise my dosage. Some of the hair grew back but the top remains quite thin and those damn squirrels do nothing but dig in my trash. Worst of all, remission was not in my cards. After all of that, I had about four “good” months and things went back to the new normal.

So here we are again. About to embark on a new adventure, a new medicine, a new chance. Benlysta, the first official lupus drug, has proven to be a “wonder drug” for so many in the lupus community. I’ve done my research, I’m part of the online support community. I’ve signed the scary paperwork about all of the risks with my usual barrage of dark humor jokes. I’ve given it its theme song. I have to have hope – you can never give up hope. But I’m a little more cautious, not pinning all of my hopes on “Benny” as we’ve dubbed the med.

If I’ve learned anything from the fairytales and Disney movies of my youth, it’s that sometimes you have to kiss some frogs to get your prince.  So…Benny…are you my prince or just another frog? I guess we’ll just have to wait and see.

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Thinkstock photo via BrianAJackson.

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